62220members
327553posts
cancel
Showing results for 
Search instead for 
Did you mean: 

June 2019 chemo starters

Member

Re: June 2019 chemo starters

You’re doing brilliantly not smoking and you will be so pleased when you break the addiction. Keep at it!! Try and stay strong as your body will be craving it.

Also in low mood after chemo Monday so will just be kind and look after myself for the rest of the day. 

Take care everyone xxx

Member

Re: June 2019 chemo starters

How are you all today, I’m struggling with energy and mood and I’ve giving up smoking which prob isn’t helping my mood, had my last two on wed Before my chemo. I’ve got a nicorette inhaler but it’s not quite the same. I know I’ve got to do this and it will get easier with time x

Member

Re: June 2019 chemo starters

Hi

I’m on EC and take my tablet an hour beforehand but still allow 1-2 hours. 

Hope it goes well 🙂

Member

Re: June 2019 chemo starters

Quick question... 

Now I'm ditching the cold cap. 

Will I be in and out in a hr? 

 

Cold cap put loads of time before n after. 

Just wondering what it's like without? 

 

Nurse said I can take my son in the summer holidays as it helps them deal with it. 

He's already planning how he will document everything he sees, he's 10 and being very mature about everything 

Member

Re: June 2019 chemo starters

  • Hello lovelies,
  • no idea why I am making bullet points!
  • anyway re hair, I had taxol and my hair did come back a little thinner but went from straight to curly and has stayed curly.
  • also re hair, please check what chemo you are on and hair loss, not all chemotherapy causes complete hair loss, thinning could be as bad as it gets...carboplatin and weekly paclitaxel I have been told only causes complete hair loss in about fifty percent of people, some just get a little thinning. Fec and ec do cause alopecia, on taxol I lost every hair on my body (the leg hair comes back annoyingly quickly!)
  • my funding appears to have been approved for carboplatin/Abraxane, starting next Wednesday it will be three weekly so I will be joining most of you with the cooling, liberating, cheekbone defining baldness.
  • headscarves - I spent loads on various contraptions to wrap round my head last time but went back almost always to a very long thin scarf tied in various ways. I found my wig and hats wayyy too hot a lot of the time! My grandson who was three at the time wore my wig more than me!
  • hugs to all of you with or without side effects, this too shall pass.
  • Ruby xxx

 

Member

Re: June 2019 chemo starters

Hi everyone 

just had second lot of FEC. wasn’t nice but only took one attempt to put cannula in hand this time rather than 4 last time so that helped! Feeling the heaviness descending in my head this evening but at least know vaguely what to expect this time. In retrospect I think steroids (3 days) finishing made me quite low last time but just thought it was me, but makes sense. Anticipating hair loss despite cold cap so interesting reading shave stories!

Chicken81 I’m also a teacher and not venturing anywhere near during treatment, not a very sanitary environment! Hope you all have a good evening, think I’ll need early night 😴

Member

Re: June 2019 chemo starters

Hugs to you all ladies. It is so nice to be able to read how we are all getting on.

 

On the hair conversation; I expected to have lost body hair by now. I have had one EC and did the cold cap and hoped to save the head hair and lose the rest quickly. Looks like I will have to shave the legs again.Smiley Frustrated 

 

I have put on a few pounds and blame it on the Steroids. That's my story and I'm sticking to it Smiley LOL

 

Woke up yesterday with a sore throat. Turned out it was Oral Thrush. The unit were great and I have tablets and green mouthwash. I suppose there have to be some side effects.

 

HeartHeartHeart

 

 

Member

Re: June 2019 chemo starters

Thank you for the reassuring comments Smiley Happy 

Member

Re: June 2019 chemo starters

Hi Chicken81, I just wanted to add to Kip's reassurance about permanent hair loss after T. Tbh, I'd not heard about that, but speaking personally, my hair has come back just as thick as it was before I started chemo in Oct '17 xx

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi ladies, love reading your posts and your are really supportive to each other.  Seems you are all hitting the "hair" stage at the moment.  It's really difficult to give a time scale for losing all your hair, we all differ.  Mine was really really falling out in handfuls by day 15 of first cycle I think, I then had it shaved off and the prickly bits dropped out a few days later.  As for hair elsewhere,  it was strange coz I didn't notice at first but a few weeks later I realised "everywhere" was very sparse and then it just disappeared, under arms, legs etc.. all gone.  Eyebrows and eyelashes seemed to be much later, probably by about chemo cycle 4-5.  Bonus is underarm hair and leg hair doesn't grow much now either!

If you are having the "T" (docetaxol) part of chemo then I have read it can cause permanent hair loss but I think that is very rare, not seen anyone on here suffering from it.  And a great proportion of ladies found their hair grew back whilst on T, mine certainly did, it started sprouting by cycle 6.  And as at least 1 of you has remarked, the relief when its not falling out in handfuls is immense, somehow you just have to pick yourself up and carry on, and its so much cooler during the summer, I used to just dunk my head under the taps last year during the hot spell!  Every cloud hey.

I also see some of you are suffering the tears of the steroids, hang in there it does pass, mine used to last a couple of days after I had finished the steroids and I got used to expecting it (OH and kids used to nod knowingly at me and mouth "steroids" to each other) Smiley Wink

Kip

x

Member

Re: June 2019 chemo starters


@mini mad wrote:

Just wondering how long it will take to lose all my hair..  been 13 days now n still got long bob length sides, front and top even though its thinning out..  still have eyebrows, lashes and nasal hair !!

 

how long did you all leave it before you had your head shaved ?

xx



I had mine done Monday so that was day 19, I still had lots of hair as thick but was coming out more each day. Still got eyebrows and lashes thankfully x

Member

Re: June 2019 chemo starters

Just wondering how long it will take to lose all my hair..  been 13 days now n still got long bob length sides, front and top even though its thinning out..  still have eyebrows, lashes and nasal hair !!

 

how long did you all leave it before you had your head shaved ?

xx

Member

Re: June 2019 chemo starters

Hi chicken

Glad you feel ok about shaving hair off. It’s so quick showering and hair washing now lol xxx

Member

Re: June 2019 chemo starters

Oh ps.... This forum censors your bad words! 

I didn't write bleep! 

S**t

Member

Re: June 2019 chemo starters


@mini mad wrote:

Sorry you are feeling weepy Alvilajo,  not really surprising 💖

ring one of the nurses on here and have a chat ,  see what they say.

hope it makes you feel a bit easier to talk about things.  Big hugs  💖💖😘


Sometimes it's good to just cry. 

We're going through an absolute shed load and it's horrible, let it come out. Don't hold it back, if you fancy a cry just do it! 

I cry after a day or two as I'm simply sick of that cannot move body feeling, but mentally you want to move. That gets me down, cry, then it's out. 

But if you need to talk, try family, friend, us, a nurse, this site has nurses, macmillan? 

I only get one day of steroids, it's not the next day, but day after I would say I get emotional. 

 

You know the other day I was like... **bleep** I've got cancer! I still sometimes want to think I haven't! It's hard going though, we're all here for each other x 

Member

Re: June 2019 chemo starters

Hi ladies, I tried to attach a pic, but it just doesn't get passed the loading stage, so I'll try again another time. 

 

Thank you all for the advice, I'll get some more 'options' next week. I'll just use wig, beenie and caps n sleep hats this week.

 

I loved!!! Getting it shaved. 

My friend / hairdresser turned me away from mirror so I didn't see it happen. Afterwards I turned around and then just laughed, was either that or cry, but why cry I wanted it... Was just weird seeing myself with no hair.

But I love having no hair come out, what a relief it was to wake up this morning and know I dont have to go into the bathroom and gag at brushing dead hair out, or have a day full of hair falling out all over the place. 

I went out straight away wearing my wig, that's it, wish I shaved from the start and didn't bother with the cold cap! 

Thank goodness I'm not using it anymore! So so so happy...

Then someone commented saying after EC are you having docetaxel, as that's can cause perm hair loss! 

Well I am having that next along with two other drugs, then dox injections, so tough... Cannt think about that comment csn I? 

 

 

Just been on phone to doc as nothing I buy is helping my heart burn, new side effects after cycle two. So got to get a prescription for some proper stuff, he said what I've bought it light relief, but since it's a side effect ftom chemo I'll need something stronger. 

 

Great, I'll get that later on then Smiley Happy

 

 

Member

Re: June 2019 chemo starters

Sorry you are feeling weepy Alvilajo,  not really surprising 💖

ring one of the nurses on here and have a chat ,  see what they say.

hope it makes you feel a bit easier to talk about things.  Big hugs  💖💖😘

Member

Re: June 2019 chemo starters

I'm so sorry you're feeling like this Avilajo x I think the steroids can affect you like this. I remember feeling low a few days after my first chemo. Is it worth phoning your chemo unit or maybe speaking to one of the nurses on here? Sending you a hug xx

Member

Re: June 2019 chemo starters

Since chemo yesterday I’m an emotional wreck just can’t stop crying. Did someone say steroids do this? Xx

Member

Re: June 2019 chemo starters

Hi Chicken81

 

Just popped in from the February group and like you I've got a wig, well two infact, and needed something easy to pop on but still looks pretty. I found Annabandana on line. They have a brilliant choice of reasonably priced headwear in different styles, colours and materials. Hope this helps. Susie B xx 

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi sorry I didn't say did I.  My oral one was different to the hospital ear one but my ear one was the same so I stuck with that.  I think if you feel happier with the oral one stick with it if it isn't vastly different.  The day I ended up in hospital with a high temp I just knew I didn't feel well,  so trust your gut too. 

Member

Re: June 2019 chemo starters

I found some really good cheap sleep caps which can also be worn under headscarves on Amazon by a company called Deserina. 

Good luck!

Member

Re: June 2019 chemo starters

Hello

I’m new to the group today. Just had my 2nd round of EC on Monday. Much easier to cope and just taking more anti-nausea drugs, paracetamol and ibruprofen to get through the worst days. 

My hair is now falling out big time. I never wanted to cold cap because of headaches and treatment time, but it is still a shock when it starts coming out in your hands! I think I’m going to my sons barbers to get it shaved off next week... just before my 30th school reunion 😖

So I’m with you going bald but have a wig, headscarves and big earrings at the ready!

Member

Re: June 2019 chemo starters

Hello Kip.

 

you didnt say if the readings were different  ??

think i will still use my oral thermometer...  couldnt tell from my ear one if my temp was low or not 🤷‍♀️🤷‍♀️

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

I also used to take my temp at random times throughout the date and night!!   I bought a new ear style one when I started and took it along to my chemo cycle and asked the nurse to use hers and then mine to see if they differed much.   I had to write down the readings every day coz I could never remember what they were!

Glad to hear the cycles are begin to get ticked off for you all, first one is the worst because you are waiting and wondering whats going to happen and the "hair"  stuff is going on.  

Keep on going girls, you are doing well

Love

Kip

xx

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Mini mad, I was always taking my temperature during chemo, I had one by the bed and one downstairs, I would have had one in every room but think my oh might have thought I’d lost the plot 🤪🤪that’s right I did through chemo 🤪🤪I think getting hospitalised for 6 days after 1st chemo made me very cautious, nothing wrong with that, we all navigate it our own way 👍💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

I did first couple of weeks but as I felt better I stopped x


@mini mad wrote:

Another session out the way 👍👍

do you take ur temp. everyday ??


 

Member

Re: June 2019 chemo starters

Another session out the way 👍👍

do you take ur temp. everyday ??

Member

Re: June 2019 chemo starters

Just finished chemo, pic line fine but had clip removed it was sore and itchy.


@mini mad wrote:

 

Picture please....👍

Anybody else feeling a bit peaky now???? Yesterday i was kinda dizzy,  woozy n little nauseaous.

finished my 3 days of Filgrastim but strong pains in hips n knees.  Now 4 days off....Dont think my ear thermometer is reading correctly..   all over the place..... been as low as 33.4 😲😲 then

 10 minutes later its up to 35.4.....  decided to stick with the oral thermometer....  this morning it was 36.7....    

bloods at hospital tomorrow then Paclitaxel on friday... treatment 5 of 12....at least i can now say i finish nxt month...(August).

moan over...  hows everyone else doing ?

Alvilajo... using the picc for the first time tday for your treatment ?? Xxxx


 

Member

Re: June 2019 chemo starters

 

Picture please....👍

Anybody else feeling a bit peaky now???? Yesterday i was kinda dizzy,  woozy n little nauseaous.

finished my 3 days of Filgrastim but strong pains in hips n knees.  Now 4 days off....Dont think my ear thermometer is reading correctly..   all over the place..... been as low as 33.4 😲😲 then

 10 minutes later its up to 35.4.....  decided to stick with the oral thermometer....  this morning it was 36.7....    

bloods at hospital tomorrow then Paclitaxel on friday... treatment 5 of 12....at least i can now say i finish nxt month...(August).

moan over...  hows everyone else doing ?

Alvilajo... using the picc for the first time tday for your treatment ?? Xxxx

Member

Re: June 2019 chemo starters

Hi chicken 81

my mum looked on line for this idea. soft stretchy t shirt, cut across under arms and your left with a snood shape, put over front of forehead, twist behind head and bring remaining back over. It actually looks good, I’ve got a navy and white stripy one xxx

Member

Re: June 2019 chemo starters

Thanks! 

Felicidad, I told only about ten people before I left, then asked for everyone to be hold once I'd gone. 

Sane reason, plus I found acting like 'normal' helped me keep it together.

I'm signed off on sick as a teacher I cannot work in a school during treatment, too risky. 

Kinda a bit worried about how to look after my new bald head after tomorrow, so any tips please. 

As you know I've a wig, but might buy something for the house? 

Something easy to pop on? 

Don't want to scare my little boy! 

Although he says he's OK, having a baldy mam isn't what a child wants. 

Member

Re: June 2019 chemo starters

Ruby - I hope your new regime will give you not such a hard time. 

 

Hope62 - I am on day 12 after first cycle of EC and except days 4 and 5 where I was quite tired, I hope I am on the way up now until next session. Injections gave me some side effects, like a chesty cough, sore throat and a bit of a temperature. I am glad you are finding yourself well.

 

Alvilajo - you look gorgeous and that color suits you!

 

Zed51 - Happy to know you had a normal week and you are making the most of them.

 

Chicken81 - You are definitely in charge!

 

I've managed to clock some hours at work these days, not too many though but it's good for me to have that routine for as long as I can keep it. Most of my colleagues at work only know I will be dipping in and out due to some health issues. I am not hiding it however didn't want to make a public announcement because I don't want to cope with lots of "poor you" looks and " be strong" messages at once - I am grateful for people's concerns and help but I just want to let people know gradually , does it make sense?

 

Oh, and one lovely soul has given me lots of rhubarb from her garden , so I am looking for recipes to use it. 

 

Hope you all had a lovely evening. Big hugs xx

 

 

 

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

💪💪💪💪chicken got your Mrs I’m in charge pants on 👍think you’ll find it liberating 👍I know I did 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

I've decided and booked in a shave! 

I've cancelled my cut n colour for Friday. 

I simply cannot go through losing the amount of hair I'm losing each day. 

It makes me sick 🤮 each morning. 

Washing this morning was the worst as the old hair that has fallen out gets tangled in normal attached hair and the amount that pulls out, urgghhh makes me gag. 

 

I'll get my wig out and cancel cold cap sessions from now on. 

 

I'm going bald! 

Member

Re: June 2019 chemo starters


@Hope62 wrote:

Hi Ladies  

Hope you are all enjoying the good weather today, I had my first session on EC last Friday and apart from being de-hydrated (need to up the water intake)  I seem to be okay so far. Finished the tablets they gave me; just got a few more days of injections.

I did the cold cap and found that I coped alright with it. No sign of hair loss, so fingers crossed.

Love seeing the pictures  Alvilaio 

Sorry to hear that you are having such a bad time  rubythursday

 Hope it all works out for you soon xxx



Hi hope62

glad your coping well with ec, my 2nd ones tomorrow.

Vic x

Member

Re: June 2019 chemo starters

Hi Ladies  

Hope you are all enjoying the good weather today, I had my first session on EC last Friday and apart from being de-hydrated (need to up the water intake)  I seem to be okay so far. Finished the tablets they gave me; just got a few more days of injections.

I did the cold cap and found that I coped alright with it. No sign of hair loss, so fingers crossed.

Love seeing the pictures  Alvilaio 

Sorry to hear that you are having such a bad time  rubythursday

 Hope it all works out for you soon xxx

Member

Re: June 2019 chemo starters


Thanks Shi - that’s exactly what happened to me with paclitaxel so I am hoping not with the next one, they are used to me now so have the injections ready to go 😊 got to keep trying these things, good to hear some people haven’t reacted to Abraxane. Ruby x
@Shi wrote:

Ruby, mishy18 got on fine with abraxane after reaction to t 👍I wimped out and went back to fec after reaction to 2nd t. It doesn’t happen to everyone but if you suddenly feel hot and your chest feels tight when you breathe in while the are administering the chemo let them know immediately they will stop it and give you bag of antihistamines to go through ❤️Hope this helps 💕💕✨✨Shi xx


 

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Ruby, mishy18 got on fine with abraxane after reaction to t 👍I wimped out and went back to fec after reaction to 2nd t. It doesn’t happen to everyone but if you suddenly feel hot and your chest feels tight when you breathe in while the are administering the chemo let them know immediately they will stop it and give you bag of antihistamines to go through ❤️Hope this helps 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters


Hiya,

yes it was anaphylactic shock, could still happen again with the next one as well he thinks it might possibly be because I have previously had docetaxol as part of fec t and I am therefore possibly just hyper sensitive to the taxols!

 

my cycle will be one chemo every three weeks, he described it as a pretty awful week a somewhat better one and then an almost normal week then do it all again! That pretty much correlated with my experience of fec t tbh and that was doable most of the time.

 

thank you for your kind words Minimad 😊

@mini mad wrote:

Hey Ruby,

 

good to hear that they are taking you off Paclitaxel,  must be a big relief for you after your awful reactions....whas it anaphalactic shock ???  

So is it one day every 3 weeks for you eventually ??

we just dont know how these drugs are gonna effect us.... kinda just a waiting game to see what/if any side effects pop up...

keep us updated and chin up lovely.

tc xx 💖💖


 

Member

Re: June 2019 chemo starters

Hey Ruby,

 

good to hear that they are taking you off Paclitaxel,  must be a big relief for you after your awful reactions....whas it anaphalactic shock ???  

So is it one day every 3 weeks for you eventually ??

we just dont know how these drugs are gonna effect us.... kinda just a waiting game to see what/if any side effects pop up...

keep us updated and chin up lovely.

tc xx 💖💖

Member

Re: June 2019 chemo starters

Hey Ladies,

 

my chemo paclitaxel is being stopped due to the serious reactions I have had, they are trying to get funding for me to have Abraxane which is another type of taxol without the solvent base. I will have this in combination with carboplatin on a 3 week cycle so will definitely lose my hair not just maybe. Will be a week or two as it’s not one they use often they have to sort out the money and a personalised prescription. 

 

Frustrated at the delay but at least I have a plan I guess.

 

Ruby xx

Member

Re: June 2019 chemo starters

Alvilajo loving the look. 

I’m having my second dose FEC Thursday. So it’s almost three weeks since my first dose. I had cold cap & no hair loss yet but tingly scalp. I had hair chopped into short style so I just wash and comb with fingers. Not expecting it to stay but 🤞. Had almost a week of relative normality so I’m really lucky. Going oncologist this pm for appointment before Thursday. Not looking forward to returning to fuzzy feeling head & tiredness!!  Hope everyone ok today x

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Looking fab alvilago, just a reminder everyone these forums are open to the whole world and anyone can look at them, please keep safe if you tell each other your locations do it by a pm or just generalise I.e north, south, etc 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

When u click reply, above the box you write in there’s a picture of a camera, click it and it says upload pic cxx


@mini mad wrote:

Alvilajo,

 

how do i post a picture on here ??

not too much into this modern technology  😆😆😆   Showing my age....


 

Member

Re: June 2019 chemo starters

I bought two from Levi, and I’m making a couple. Amazon eBay xxxx


@Debi2 wrote:

Hi 

 

Alvilajo that looks really nice, i am going to go on amazon and have a look for one.  Where did you get yours? 

 

Debi


 

Member

Re: June 2019 chemo starters

Hi 

 

Alvilajo that looks really nice, i am going to go on amazon and have a look for one.  Where did you get yours? 

 

Debi

Member

Re: June 2019 chemo starters

Alvilajo,

 

how do i post a picture on here ??

not too much into this modern technology  😆😆😆   Showing my age....

Member

Re: June 2019 chemo starters

It sooo suits you.....😘😘

Member

Re: June 2019 chemo starters

Thank you I was surprised I liked it xxx


@rubythursday wrote:

You look fabulous xxx
@Alvilajo wrote:

 

BD59B368-D916-4A78-8C18-6E8275031C1D.jpeg